Hi, new here

[thenmama]

xxx

Edited March 25, 2013 by thenmama

[kimballot]

Hello and welcome to the forum. When I read a post like yours I want to say "welcome to the family" because when I found this forum I realized that there were so many people who had the same history that I had and it was like I had just found family members that I did not know existed!

 

I have a 13-year-old son with a history that is very similar to your daughter's. Yes- you are in the right place.

 

It sounds like right now your daughter is battling a sinus infection and hopefully the omnicef will help. As you read through the posts you will learn that once a child has PANDAS they often develop PITAND (pediatric infection-triggered neuropsych disorder) and once they do then ANY infection or inflammation can cause an exacerbation -- not just strep.

 

It is interesting that your CBT therapist said PANDAS treatments take about a year to work. I am not sure where that came from. Does he/she mean CBT PANDAS treatments, antibiotics, or IVIG? I think PANDAS treatments take a varying amount of time to work depending on the child and the infection. Some kids with strep throat and a first time exacerbation seem to recover fairly quickly and may have few recurrances. Kids with allergies and sinusitis may take a bit longer because allergies cause inflammation, so there is lots to deal with. Some kids have underlying lyme infections and that can take a long time to find and treat. We really do not have any studies yet to tell us how long treatment will take.

 

It sounds like your daughter is in a pretty severe exacerbation right now if she is too frightened to do her CBT. Many people find that giving ibuprofen around the clock for a few days can reduce inflammation (don't do it long term without a doctor checking liver functions) and reduce PANDAS symptoms. Also, some folks have had success with valerian root to help calm during the day. We use melatonin and 5HTP to help sleep at night.

 

I also want to encourage you to find a PANDAS specialist to work with. There is a list of docs in the pinned threads at the top of this page.

 

I am sure that others will chime in to welcome you also and have very good ideas.

 

Wishing you all the best ~

[SarahJane]

It certainly sounds like you're in the right place with everything you've described. If you felt relief that you'd found your answer when you read thru the PANDAS info (like you'd never felt b4 with other dx's give by the dr's), then it's probably PANDAS. My advice is to go to a PANDAS expert and not waste time with docs that may/may not believe in PANDAS. Not sure of your location, but the experts will get an answer to you more definitively than any regular doc/therapist will & treat it as it should be treated. Also, SSRIs weren't successful b4 per your message, so I'd fight the CBT on that based on her history with them. (They're actually not recommended for PANDAS despite some of the conflicting info out there.) I don't know where the "year to work" thing came from either...it could take longer or it could be less time--just depends. With the age of your daughter, you don't have time to spare with treatment, so that's another reason to get to an expert. In the meantime, get the doctors to run strep tests (rapid/culture & titers) & check for Mycoplasma Pneumonia...sinus infections can cause symptoms too tho'. AND many of our kids are asymptomatic to strep, so they may not have the sore throat or fever & they may have low titers...that's what makes it so frustrating/scary!

 

I'm glad you finally found PANDAS and that you're finally able to get some help for your daughter & your family too. You've been on a journey & now it sounds like you're on the right path. GOOD LUCK & WELCOME to the forum...we're happy to help & share info. I'm sure others will chime in too.

[EmersonAilidh]

Definitely sounds like it could be P.A.N.D.A.S./PITAND! Kinda just mirroring what SarahJane said here... I'd go straight to someone who actually knows something about P.A.N.D.A.S. instead of wasting your time. Has she tested negative for strep before or has she just not been tested? I'd get her antiDnase-B & ASO titers ran. Any P.A.N.D.A.S. doctor would do that. There's a test from a woman named Dr. Cunningham at the University of Oklahoma called a CamKinase-II test, but I don't think they're mailing any of those out until the new year & it's a tad pricey. What state do you live in? There's a doctor's list buried somewhere on this forum...

 

When you have neurological/psychiatric issues going on being a "sick kid" can't be ignored. This is just my little theory, but I think that strep is the biggest trigger, but once our immune systems get confused other sicknesses can cause the same problems. I've got an upper respiratory infection right now. I knew I was going to get sick this week because of how bad my symptoms got exactly a week ago. It amazes me that some doctors don't see the connection between general health issues like strep & not-so-common ones like OCD & sensory issues. Best of luck to you! Let us know what you find out. <3

[thenmama]

xxx

Edited March 25, 2013 by thenmama

[thereishope]

I don't have too much time to answer, but wanted to touch base on allergies. What allergy med do you use?

[EAMom]

 

 

 

 

I will go back and check the doc list after I post this to see if I can find someone in our area, or within a day's driving range (we're about 2 hours south of DC), but we're willing to travel elsewhere if needed. I'll also ask about the tests you mentioned when I talk to the doc on Monday.

 

 

 

I agree with the others....strep tests (culture whole family, consider titers if those are neg), mycoplasma test, workup with immunologist (checking for immune deficiencies etc.), Cunningham test (through Univ. of Oklahoma).

 

If you are near DC, you should make an appointment with Dr. Beth Latimer (pediatric neurologist). She is one of the most popular docs on this forum. It would be good to have some lab results in hand (like the Cunningham test) by the time your appointment roles around.

 

Has your dd been on steroids for the asthma? That could affect the Cunningham test results.

Edited November 28, 2010 by EAMom

[thenmama]

xxx

Edited March 25, 2013 by thenmama

[thereishope]

I asked about brands since the right one really varies with kids. For my son (some kids are the opposite), Claritin made him hyper and ramped up OCD starting on day 11 of use. Dye free Benadryl worked for him w/o causing sleepiness. He also recently started to use Natural D-Hist Jr. That a chewable and might be something worth looking into. That's great for allergies. MY PANDAS took it fine and it was the only allergy med that helped with my non-PANDAS son's bad allergy induced sinus infection earlier in the year.

[EAMom]

I just wanted to mention that I was told (by my doctor) that anti-histamines can be bad during sinus infections b/c they dry your sinuses out....so they can be a bit of a double edged-sword (since allergies can also make you more prone to sinus infections!) http://www.intelihealth.com/IH/ihtIH/:/9339/31675.html

 

Antihistamines � These medications help to relieve the symptoms of nasal allergies that lead to inflammation and infections. However, some doctors advise against using antihistamines during a sinus infection because they can cause excessive drying and slow the drainage process. Over-the-counter antihistamines include diphenhydramine (Benadryl and others), chlorpheniramine (Chlor-Trimeton and others) and loratadine (Claritin). Fexofenadine (Allegra) and cetirizine (Zyrtec) are available by prescription.

 

Just something to be aware of!